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Eric Drew posted an update in the group The Marcus Bannon Glioblastoma Multiforme (GBM) Global Advocate Network
My father’s business partner and friend Tom has been recently diagnosed with Glioblastoma Multiforme, and of course I offered to meet with them and assist his wife Francesca with evaluating next steps and treatment options. Tom and Francesca live in Hawaii where they had the initial tumor extraction surgery which is generally the first step in treating GBM. Because of the precarious position of the tumor the surgeons were only able to extract about 40% of the tumor, which is also standard with Glioblastoma patients. Now to decide on next steps and make sure that the treatment he receives gives him the best chance of survival with the least amount of damage.
Tom has specified that he didn’t want to do chemo, so initially the research was focused on radiation and surgical options to remove as much of the tumor as possible without damaging healthy brain tissue. It became obvious quickly that he two most advanced options here are the “Gamma Knife” and the Laser or “Cyber Knife”. Both of these procedures use different types of focused radiation to kill very specific areas of tissue, and there is debate on which one is actually most accurate. I found this blog and comment which explain things as clearly as any I have found, and comments would be appreciated here. http://neuropathologyblog.blogspot.com/2010/10/gamma-knife-and-cyber-knife-whats.html. The ideal scenario would be to seek treatment at a facility that does both procedures, see specialists in both, and potentially use both therapies to maximize the effectiveness of each. I have not seen this recommended to simultaneously pursue both treatments, but it would be an interesting strategy to pursue as both procedures have their advantages and limitations.
The next phase of research entailed studying current and closed clinical trials for new technologies and protocols which include chemos, kinase inhibitors, and even the very promising new area of Immunotherapies. https://clinicaltrials.gov/ct2/results?term=Glioblastoma+Multiforme&Search=Search
What became immediately clear is the predominant use of Temodar (TMZ) or Temozolomide, http://www.chemocare.com/chemotherapy/drug-info/Temodar.aspx, which is a new chemotherapy drug which is quite targeted to the types of cells found in GBM and minimizes damage to healthy tissue more than previous brain cancer chemotherapies. Another benefit is that it is taken in pill form which limits the necessity of going into a clinic to receive chemo infusions. This is definitely an option to consider.
The next items to note were the use of various kinase inhibitors. We identified several possibilities that were listed as interventions for GBM including Lenvatinib, Bevacizumab, Vendatanib “Zactima” ZD6474, Cediranib, and Erlotinib. It is not clear which one or combination of which is more effective, and like any other cancer intervention, the effectiveness of each may depend on the genetic factors of the individual patient.
Immunotherapy trials that we found included “ICT-107” (https://clinicaltrials.gov/ct2/show/NCT01280552) and IMMU-132 (https://clinicaltrials.gov/ct2/show/NCT01631552?term=immu-132&rank=2) , and the amazing Polio virus trials (https://clinicaltrials.gov/ct2/show/NCT01491893?term=Glioblastoma+Multiforme+polio&rank=1) but we have not yet evaluated the efficacy of these new technologies.
We also found “Boron Neutron Capture Therapy” to be a possibly effective therapy as well, but did not look into this in great detail yet.
In my opinion as a cancer survivor that went through just about every possible therapy that existed at the time for the leukemia I had, the best possible strategy would be to “shotgun” all or as many of these therapies as possible as quickly or as simultaneously as possible to maximize the chances of killing the tumor and recovering. Doing them one at a time may give the tumor a chance to recover from each, but used simultaneously they just may overwhelm the tumor permanently. This is general strategy advice and not a specific treatment recommendation, but please consider this when considering your treatment options as well as considering what medical centers have the best options for you!
Making sense of all of these options is such a difficult task for any patient or advocate, and only by sharing what we learn on WeHeal can we bring all these people together to help each other through this most difficult time of making life and death decisions. It was my pleasure to help Francesca and I look forward to assisting her moving forward.
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Eric Drew changed the name of the group The Marcus Bannon Glioblastoma Multiforme (GBM) Global Advocate Network from "Glioblastoma Multiforme (GBM) Advocate Network" to "The Marcus Bannon Glioblastoma Multiforme (GBM) Global Advocate Network"
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Dr.T posted an update in the group The Marcus Bannon Glioblastoma Multiforme (GBM) Global Advocate Network
My Cousin was just Diagnosed with GBM and has had one brain surgery, and she is on a chemo and Radiation course right now. She has been to Mayo Clinic once and lives in Minnesota. Does anyone know any good oncologists in that area that could be recommended to her?
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Hello Dr. T, your timing is perfect! Right now WeHeal is arranging free treatment and trial consultations for cancer patients (especially GBM) with a team of nurse advocates, and that’s exactly the information they specialize in. ( They will research and let you know what trials are being done and who are the top oncologists / researchers in her area. This service is extremely valuable so lets get it done for your friend right away and get her to the top researchers in her area. I was also treated at the Transplant Center in Minneapolis affiliated with Mayo. It is a great area to be for advanced medicine! The request form link is located on the WeHeal home page, and please feel free to call me directly to discuss. 408-607-3739.
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Taken form the consult posted below, has your cousin had testing for MGMT promoter methylation? The MGMT status guides how and when to have the chemo temozolomide. (frequently called TMZ). Also she should probably have broad genomic testing using a test like Foundation One, if that is possible. These tests may identify specific mutations or genetic alterations that make you eligible for specific clinical trials now or in the future.
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